|/ sometimes feel that
I am sleeping with
Discussion with the person with
Over 250000 cases of AIDS were
notified worried-wide up to the end of April 1990, most of them in North
and South America (153720), followed by Africa and Europe (33896). The
number of cases reported in West Germany including West Berlin was 4863
at the end of May 1990. Following extensive research, the WHO estimate
of the number of people affected by AIDS was raised by 2 million, and the
organization suggests that it must be presumed that from 8 to 10 million
people actually carry HIV (July, 1990). This increase has been especially
dramatic in the African countries south of the Sahara, and in Asia. The
WHO projections suggest that by the year 2000, 15 to 20 million people
will be infected with HIV.
|AIDS has the aura of
|cancer and syphilis.
In Europe, the epidemic is
spreading with a delay of about 2 years behind the development in the USA.
Statistics obtained from the W. German office of Statistics show characteristics
typical of AIDS, and a similar rise in the number of those with the disease.
This means that very soon care of the AIDS patient, and those infected
with the virus will become the responsibility of general practitioners,
as well as all other doctors.
The particular situation
of the AIDS patient
The majority of AIDS patients
are young and homosexual (75%). The homosexual man is still in a process
of finding his identity. He has still to "come out". AIDS however forces
the patient to "admit" concurrently both to his homosexuality and to a
disease which is outlawed by society. Many homosexuals have a clear picture
of all of the horror of the disease process, as most have ill friends,
and almost all of them know of someone who has died of AIDS. The AIDS patient
lives in a society where his illness will be subject to an emotional-laden
(especially whipped up by the media) public discussion. This discussion
about AIDS releases anxieties and fantasies about death, homosexuality,
sexual perversions etc.
The patient is suffering
from an incurable disease, and he knows this; however like every fatally-ill
patient he ricochets between despair, hope and denial, and clings to every
suggestion of "new treatment" that he hears about daily in the press. He
experiences rejection, prejudice and restriction from the side of the media,
from those around him and, not infrequently, also from those who are caring
for him medically. Gregor Schorberger, a chaplain at a Frankfurt hospital,
quotes deeply-wounding comments made to these patients: "Now you are paying
the price for your disgusting life-style", or "We'll put him last, he will
be dirtying all our machines again". The reactions of those around release
such fantasies as "The Health Service won't treat me". "There is a group
of doctors who would like to tattoo all HIV-infected patients nowadays,
just as was done to the Jews and gays in concentration camps; they want
to brand me like an animal". The AIDS patient is bombarded by inept headlines
from the press "Are AIDS patients tomorrow's murderers?", "No civil servants
with AIDS; Bayern takes the consequences", "No chance of cure in the next
As AIDS is an incurable and
potentially fatal disease, it has many parallels to cancer. AIDS
patients also show the typical phases of denial, protest or depression.
It has been shown however that AIDS usually releases more intense anxiety
and fantasies than does cancer. There are specific stress factors as well
as the severe physical, usually obvious, symptoms (weight loss, hair loss,
patient is suffering from a venereal disease, and knows that it
can be further transmitted by sexual activity.
||He usually belongs
to a minority group (homosexual) or was already ill (hemophiliac
||He has to live
with the additional burden of "AIDS hysteria", which can be manifest for
example in an exaggerated anxiety about contiguousness (S. Becker).
There are in addition psychological
changes caused by the disease, especially those of various forms of depression,
anxieties, deliria and dementia (AIDS encephalopathy). The increased
incidence of suicide in AIDS patients is explained by the particular
psychosocial situation, in addition to the general readiness of those in
their 20's to attempt suicide.
These factors explain why
the AIDS patient (in contrast to the cancer patient) is under two additional
of guilt and
Those who are incurably ill
(such as cancer patients) already tend to have feelings of guilt. These
are present to a greater extent in AIDS patients, because they are suffering
from a disease which is mainly sexually transmitted. The homosexual AIDS
patient considers that AIDS is the punishment for his homosexuality.
This particularly affects those who had already unconsciously criticized
themselves before the onset of the disease. This tendency of self-criticism
is markedly increased by the judgements of guilt received from the environment
(public and media). This means that the patients regard their disease as
though it were caused by their homosexual life-style itself. This clearly
reveals the sharp differentiation that society makes between "acceptable
diseases" (coronary infarction) and "unacceptable diseases".
The cancer patient usually
feels isolated, whether or not his family is caring for him, because of
the lies that surround the situation. In contrast, the AIDS patient does
not only find himself with this internal isolation, but he also
experiences a very real external isolation from others; this includes
the withdrawal or distancing of his family, isolation at or from work,
and in housing, as well as the isolation associated with homosexuality
itself. AIDS forces many who have broken off contact with relatives due
to their homosexuality, to return to their family. This return is made
more difficult by the two admissions that he must make (to his disease
and to his homosexuality). Previous friends are no longer friendly or avoid
him. In addition, the age at which he became ill (around 30) is often associated
in homosexuals with the time of the life-crisis when it is becoming clear
that he is homosexual, and not available for heterosexual relationships.
It is this double burden of self-criticism and social isolation
which explain the frequent occurrence of severe states of depression in
The HIV test
The HIV test is basically dissimilar
to tests which are usually carried out to confirm or exclude the presence
of an infectious disease. It is incorrect to describe the HIV antibody
test as the "AIDS Test". The HIV antibody test shows whether antibodies
against the virus are present in blood. There is no unique test for AIDS,
as a positive result from the HIV test does not mean either that the patient
has AIDS, or allows a definite prognosis (as according to our present state
of knowledge, it can not be estimated what proportion will become sick
later). Nevertheless to hear that there is a positive test result is extremely
serious for the person involved. Not only has he become infected with the
HIV virus, but it is very likely that he will become ill with AIDS and
die. An "HIV positive" result is a tremendous blow, particularly as the
majority of those tested have asked to be tested in the hope that they
could be released from their anxiety about AIDS by this examination.
Experience has shown that
most of those with a positive result initially react with helplessness,
anxiety and loss of control, and in fact have a higher frequency (72.5%)
of psychological disturbances than those with AIDS itself (52.5%) (J. S.
Mandel). It also appears that HIV positive patients are more likely
to commit suicide than a patient suffering from AIDS. A positive
test confronts the involved person with a whole series of questions
and problems in a shattering way:
These questions are particularly
pressing, as, in contrast to cancer patients, HIV positive patients are
usually young people, who, from a statistical point of view, should have
a long life before them.
are healthy, but potentially fatally ill.
||You are living
with a time bomb: when will you become ill or might it never happen?
you, and whom have you infected?
||What will happen?
||How can you live;
should you carry on living?
||What is your
social situation? (M. Frings)
Therefore consultation about
the HIV test always consists of two discussions. The first is carried
out before the test. This should explain in general what the test
can indicate, and what not, with a determination of what the test means
for the person who wishes it to be carried out. The second discussion
serves not only to give the result but also to explain the consequences
and necessary behaviour. Both of these interviews have to be carried out.
A. Jötten from the AIDS Advice Bureau in Frankfurt insists that all
doctors who order an HIV test must be prepared to adequately pass on the
findings. If the doctor is uncertain whether or not he can advise and care
for a patient with a positive HIV test, it would be better that he sends
the patient to a help center or one specializing in AIDS.
There are various grounds
for the request for an HIV test:
are people who would like the test just because it is available, even though
there is no evidence that they run an increased risk.
from people coming up to a significant change in their life (new job, marriage,
desire for children etc.). A negative test result can spare these people
a lot of anxiety.
||A third group
includes people who are definitely at an increased risk of infection (homosexuals,
bisexuals, drug addicts, prostitutes or hemophiliacs), for whom there is
a clear medical indication for the HIV test.
is a group who suffer from AIDS phobia. They create a particular
problem for all who have anything to do with the care of AIDS patients.
They are those who are firmly, but incorrectly, convinced that they have
AIDS, and whose opinion can not be altered by medical examinations (repeatedly
negative HIV test). They do not usually belong to a group which is highly
involved, usually have already been tested for HIV antibodies with negative
results, but nevertheless basically disbelieve the results, and repeatedly
visit the different types of help centers. There is usually a feeling of
guilt (condemnation of his own sexuality) underlying this markedly anxious
behaviour. The patient is very concerned and restlessly drifts from one
AIDS expert to another. They occasionally create the impression that they
unconsciously desire that AIDS be diagnosed. They decide never to visit
a doctor again after a negative test, but their resolve breaks when they
are overwhelmed by anxiety once again.
AIDS specialists recommend
that the HIV test should not be performed at all (even if there is a strong
chance of a positive result), if nobody is available to care for the person
after the result is given.
In no circumstances should
the result be given over the telephone or sent in the post. The result
should only be given during an extensive discussion, for which at least
2 to 3 hours are available in the case of a positive result. Even where
the person knew that the result was likely to be positive, there is a great
danger of suicide or panic-like behavioral disturbances immediately
after the result is given. One soldier who was given a positive test result
with the words "Congratulations! You have AIDS" reacted with panic and
aggression, which should have been anticipated by his reply, "If that's
the case, I will take another hundred with me". He returned four weeks
later with recently acquired gonorrhea (Salewski). During the initial discussion,
before the test, an answer should always be determined to the question,
"What will it mean to me if I'm positive?"
As regards the question of
whether the patient has to be given the complete truth; there is only positive
or negative as an answer. Contrary to informing a patient that he has cancer,
the person involved must be given the positive result, as only with this
can he be motivated or obliged to change his sexual habits so that he might
no longer be a source of infection ("safer sex"). The negative test result
can also motivate the person to take preventative measures.
As regards the patient with
phobia, it is important to initially take the problem seriously, as
it is very stressful for the person involved. Structured discussions should
be employed to work through the psychological aspects of the syndrome,
but not to interpret. The patient should be encouraged to thoroughly think
through all of his concerns, as this itself reduces the anxiety. Further
tests should be discouraged. The patient should be offered further contacts
and/or the chance of therapy tailored to his needs (special psychotherapy)
Care of the AIDS
In most cases, the best care
is provided for the AIDS patient when there is successful cooperation between
doctors, psychotherapists, supporting organizations and self-help groups.
Nevertheless it is important
to stress that the way in which a patient copes with the emotional side
of his illness depends on the trusting relationship which the patient has
with the doctor who is primarily responsible for his care (S. Becker).
In other words, the AIDS patient needs a firm pivot, such as his
general practitioner, at the center of the group of helpers. It can be
that additional care is required if there is a "basic illness" (drug-dependence,
hemophilia). The decision about who "should do what" should be based on
the motto: "As much as possible as an out-patient, and as much as necessary
as an in-patient."
and "social isolation" are the major stress factors for AIDS patients,
and psychosocial care is directed at these. It is therefore important that
the helper (whether doctor, member of the nursing staff, psychologist or
chaplain), think about their own fantasias and anxieties, as they are also
a part of a society that has developed its judgements and prejudices about
AIDS. It can be advantageous to examine definite, proven knowledge about
homosexuality, in order not to be guided by prejudice.
In principle, the same conditions
apply to discussions with AIDS patients as to the care of those with other
disease, and include empathy, the ability to listen actively, and genuineness
of the approach. The patient should be accepted as he is, and should be
allowed to speak openly with no concerns about moral judgements on his
problems. It is important to meet him "where he is". Suppositions which
are of particular concern to AIDS patients, should not be headed off, but
thought through to the end. The realization that time is limited sometimes
makes life more worthwhile, and serves as a motivation to work out oneself
and one's life (G. Höchli, B. Jäger-Collet). The AIDS patient
also goes through the typical phases shown by the cancer patient (repression,
anger, depression) before he is finally able to experience equilibrium
and have a cognitive approach to his situation (see chapter "with terminally
ill and dying patients" ).
The responsibility of the therapist is to accompany the patient on this
path, and not to try to accelerate these steps in development (which probably
would not work in practice anyway). Höchli and Jäger-Collet have
summed up the guide-lines for working with AIDS patients as follows: "The
therapy has more of a supportive than a revealing character. Positive feelings
and thoughts are encouraged, possible improvements in health accentuated,
conflicts resolved, anger and resentment worked on, 'unfinished business'
discussed, focusing on the immediate and near future, preventative measures
instigated, and concerns thought and worked through to the end."
AIDS patients in particular
have an intense desire to find answers to questions about the meaning of
life, about God and eternal life. Schorberger writes from his experience
as a hospital chaplain dealing with AIDS patients: "We have found that
there is no other ward from which come so many requests for religious encounter;
this can be for prayer, or a service at the bedside, it can be a request
for daily bible readings or daily communion for the sick, for confession,
discussion with a priest or anointing of the sick ..."
Coping with illness is especially
hard in the case of homosexual AIDS patients. One of the main tasks of
therapy is to restore the identity by a process of recognition
(Who am I?, What am I like?, What do I want?). The patient often experiences
long and difficult routes to self-discovery until he can finally state,
without anxiety, "I am what I am, and what I am needs no excuses" (from
a song in the musical "Le cage aux folles").
The AIDS patient
and his relatives
It is especially important to
involve the relatives in the care of the AIDS patient, as they help to
reduce the particularly marked feeling of isolation. Usually the disease
is a great burden and stress for the relatives. The relatives therefore
require intensive counseling, to prevent them becoming an additional burden
for the patient, rather than a significant support and help.
Initially it is important
to remove unfounded anxieties about infectivity by factual
discussion. The relatives should be told honestly that their willingness
to stand by the patient with AIDS can by very helpful, but also very difficult
and stressful. They have to be informed about the expectations and
of patients with AIDS. They should know that anxiety, rage, despair or
accusations can arise (as with cancer patients), and that they should not
take these reactions personally. Relatives should also know that AIDS patients
go through stages where they are totally unable to cope, during
which they need somebody to lean on, and by whom they can cry. However
the AIDS patient does not always want to be reminded of his illness, but
would far rather carry on as usual with his daily routine, to the
extent that it is possible. Therefore every form of excessive care should
be avoided. It is not always necessary to talk, as non-verbal signals such
as smiling or touching are just as good as conveying affection, and creating
peace and calm. It is not advisable to evade the patient's questions about
things that are very much on his mind, for example, to appearance, progress
of the disease, expectations for the future etc.
Particular problems arise
when the parents or spouse first find out about the patient's homosexuality
or drug-addiction when AIDS is diagnosed. Possible prejudice and incorrect
ideas about homosexuality have to be confronted, and the relative informed
that homosexuality can be regarded as a variant of human sexuality and
behaviour. As the AIDS patient is very often resigned to his illness and
total life situation, all references implying guilt and prejudice should
be avoided, in order not to deepen the hopelessness of the patient.
It can be helpful to the relatives to be mindful of the fact that the illness
is caused by a virus rather than the life-style of the patient.
The illness should be discussed openly with relatives, friends, neighbors
and work colleagues. The parents of drug addicts are also able to join
a group for parents, and self-help groups for parents of AIDS patients
are also forming.
Geisler: Doctor and patient - a partnership through dialogue
Pharma Verlag Frankfurt/Germany, 1991
of this page: http://www.linus-geisler.de/dp/dp31_aids.html